The Team Approach

Good news, finally! I had the upper endoscopy and the colonoscopy, and I don't have Crones or even any internal bleeding- at least in the upper and lower! Plus, my Hematocrit was higher than expected given that I had 2 units of blood. So the doctors and I are suspecting that this is evidence that my bone marrow is beginning to produce red blood cells again on it's own. So even though the Guru told us that the Cyclosporin wasn't the cause of the anemia, it is looking like the master was incorrect. Is it coming across that I am a bit disenchanted with my Guru? I have had it with not being able to get in touch with him- and the fact that he doesn't get any of my bloodwork results- or gets them and doesn't have time to look at them. I know he is an excellent Neurologist, but I need an Neurologist who is going to treat ME- not my disease.

I spoke with Dr. Leverett, my primary care who actually CARES, and we have a plan to fight this thing together. No longer will I be in charge of making sure my doctors are able to communicate. They are all aware of each other, and are going to work together to help me get well. I have decided to move all my treatments up here to New Hampshire, rather than trying to coordinate between here and Boston. Exeter has a fantastic cancer center, so they are very familiar with administering Cytoxan (which I will be starting after the holidays). I will be meeting with the Hematology/Oncology group either this week or next to set it all up. Jason and the kids and I went in to see Dr. Logan (my local Neurologist) this morning, and the plan is to manage me with IVIg until my anemia is controlled enough to start the chemotherapy. Dr. Logan is comfortable with the results of my recent kidney function tests and feels that the IVIg will be safe now that the cyclosporin is leaving my system.

I am feeling much less anemic, but the MG is starting to rear its ugly head again. I had some trouble swallowing my pills yesterday, and I was ready to dismiss it, but then I thought twice, and set up IVIg for next week. It is a good thing, because I started to slur again today at about 4 pm. We are going to try our best to stay on top of this thing- I have to get nice and strong to start to kill my immune system!

Sorry to be so technical here- I feel like all I do is talk about medical stuff these days. My awesome sister in law is coming to take the kids this weekend so Jason and I can have some time to ourselves. It is a guard weekend, so we won't have a ton of time, but I am happy to take what I can get.

I am happy with the plan that we have, and thrilled to have all my doctors in the same hospital and in contact with each other. We are going to beat this thing- you all watch me!